‘What should we do, doctor?’ Emergency medicine intern recalls hard discussion about end of life

I was prepared for breaking bad news. I knew how to tell someone that their loved one had died. I knew how to say those words honestly and unflinchingly, and I wasn’t afraid of it.

This patient was different, though. She had spent so long lingering on the edge between life and death that the lines of mortality and morality had blurred. She was heavily sedated and living on a ventilator. Her family couldn’t decide whether to let her die. It was a decision they had deferred many times. Now, they turned to me for answers.

I was three months into my medical career as a first-year emergency medicine intern, rotating through the intensive care unit. The patient in question was a chronic visitor to the ICU, a middle-aged woman with crippling obstructive lung disease. Every visit was the same painful story: a horrible urinary tract infection, followed by a bloodstream infection, all overshadowed by her severe respiratory difficulties.

She spent her days in bed with high-flow oxygen pouring into her distended lungs, waiting for a missed breathing treatment or an allergy flare-up to send her back to the hospital, all too often on a ventilator.

Here was the problem: she hated being intubated. She told her family that she would never want “that damn tube down my throat again.”

But what if the alternative meant death? She didn’t want to die, she said. No one could find a solution for her, because there simply was no solution.

When I first met her, there was no time for a careful weighing of options. Late one evening at the hospital I was summoned for a “rapid response.” I found her lethargic and wheezing through a breathing mask, barely able to speak. I reviewed her labs quickly and examined her. Then I told her that she would likely need a breathing tube to survive.

Her eyes snapped open, and she angrily shook her head “no.” I told her that she would almost certainly die without it. Did she understand this? She opened her eyes, gazing at me with raw fear, but would not answer my question. I asked her again if she understood. She glared at me, refusing to make the decision. When she lost consciousness, I had only her family to speak to.

“She said never again,” her daughter told me. “But she doesn’t want to die. But I don’t want to torture her, either. What should we do?” What, indeed?

“Your mother has a terminal disease,” I said, trying to sound as impartial as I could. “Her lungs are worsening day by day. She’s coming back to the hospital more and more frequently. Her body is breeding bacteria that will eventually outsmart all of our drugs. I can’t tell you if she’ll survive this visit, but if she does make it home, her quality of life almost certainly will keep declining. Would she want to live like this?”

Maybe the daughter sensed my true feelings, because she snapped at me: “Well, we can’t just let her die if we’re standing here, and we can save her! That’s murder.”

I told her that allowing people to die was not murder, but rather, in my opinion, it was “nature taking its course.” I learned this phrase in medical school.

“There’s nothing natural about that!” she said of all the machines around her mother. “We crossed that bridge long ago.”

And so, the family asked us to insert the breathing tube.

In the days that followed, the patient had a raging fever despite multiple antibiotics. She needed medication to sustain her blood pressure. Her kidneys started failing. Her lungs filled with fluid. We kept her sedated on a narcotic drip.

The only response she would give me when I roused her was to point angrily at her breathing tube.

Day after day, I met with her daughter and husband. “Are we doing the right thing?” they wanted to know. “Should we let her die? What should we do, doctor?”

I tried not to let my anger show. What were they implying with these questions, directed so pointedly at me, as if I alone had chosen to torture their loved one?

I hoped that my superiors would step in. Surely the attending physician and senior residents could draw upon years of experience and offer guiding wisdom to the patient’s family.

But no one knew what to say. Everyone stalled. “Let’s wait until tomorrow,” became the official chorus. “We’ll see how things look then.”

After 12 days, numerous senior physicians had come and gone, but I was still there and so were the patient and her family, agonizing over what to do.

Ultimately, her family decided to transfer her to hospice care, after choosing to have her breathing tube removed. The patient died soon after.

Many months have passed by, but I still think about this patient and her family often. Could there be some valuable lesson here that would shed light on the dilemma of human suffering? Could there be some principle about advance directives or patient autonomy to take to heart?

Perhaps.

In my heart, however, I know that this case was never about the end of one woman’s life. It was about living with the consequences of our decisions and our indecision. It was about recognizing that these ethical issues don’t become easier as doctors advance in our careers, or as patients advance in their illnesses. Sometimes, the waters only become muddier.

Every day, though, I am learning how to stay afloat.

Matthew Trifan M.D., is a resident physician in emergency medicine at Jefferson University Hospital.